Heart Transplant Picnic

So, we spent the better part of the day at a heart transplant picnic.  It was so neat to meet other heart parents and to spend time getting a better picture of what our future could hold.  Just like every child with a CHD has a different journey, every child with a transplant has a different journey.  There can be surgical complications (or not) infections (or not) hospitalizations due to illness (or not).  But, honestly, it doesn't sound THAT much different than the life we are already living.  With the exception that one year post transplant, life starts to become somewhat normal.  I mean, you still have taking meds every day, on time, without fail (which we already do), blood draws (which we already do), and doctor visits (which we already do).   And, the first year sounds grueling, specifically 3 blood draws a week!  Yuck!  But, Carla might be alright with that if I continue to remind her that she will a) not have to do shake treatments 2 or 3 times a day; b) will not have to wear oxygen; and c) will feel so much better than she does functioning on 80% oxygen saturations.  As weird as it sounds, we are kind of excited!  Mostly excited to see our daughter run and play with 100% O2 Saturations and boundless energy!!  Here's to focusing our energy on the fact that Carla's  perfect heart is coming soon!

Thank you for your continued good thoughts and prayers :)

Love, Jen


The Simmons Family said...

That is exactly how I get past the fear of transplant. No oxygen tubes..no more wheezing when walking up the stairs..I can let him play sports. It's the normalcy of having a functioning heart. Prayers that Carla will get her miracle heart soon.

Katie said...

Yes, thinking and praying for sweet Carla often. What a wait this has been. I'm happy you were able to attend the picnic and gain some hope and excitement in this crazy adventure. Hang in there!!!